Re: [Polycystic Kidney Disease PKDiet] Indicators of kidney health

[Diane Smith]

i am so glad your GFR has not changed  Angelica makes a bread no salt added with only 5mg sodium.   

I have found as  age 75 y/o i need to keep vegan because of all the bad stuff (in USA) added to food and especially meat products

Where do you live?

Diane

On Dec 11, 2022, at 8:08 AM, sourav...@gmail.com <sourav...@gmail.com> wrote:

Hello great inspiring people,

Even though my kidney function and all the tests (including sugar, uric acid, BP, etc) have been normal, I feel sick many a times in different ways. Sometimes urination urge is more frequent and stronger than usual. Sometimes, on having certain fluids like coconut water, soup, etc, I feel a weird discomfort on my left side (where I have the largest cyst of 4.5 cm) like bloating or if the liquid is not getting filtered properly. And of course I do experience pain from time to time on both the sides. These symptoms can be because of other reasons as well but I am not very sure and want to rule out the PKD angle first.

I want to know even if the usual parameters like creatinine, urea, eGFR are normal, is it possible that the kidney is not functioning to its optimum and if there is a way to find it out? In what ways can we understand our kidney health better (other than blood tests) and take corrective actions? 

Btw, I am aged 36 and a PKD patient with cysts in both kidneys and liver. Kidney parameters, BP, Sugar have been normal so far. But family history is disheartening.

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[Diane Smith]

Doctors look at the GFR to determine if your kidneys are fine. Where do you live? It sounds like you need a nephrologist with a few patiients with diabetes. My own here in Hawaii has almost all diabetic patients. I think I ‘m the only one with PKD but before COVID when I did travel I went to the Mayo clinic and saw Dr Vicente Torres. 

He was the best 

I am now 75 and the oldest PKD patient at the Mayo. Dr Torres told me once i would never need dialysis. 

I have never had a decrease in kidney functioning. I have always brought it up by eating vegan. I eat vegan because here in the USA the food manufacturers put so many bad things in food.

Low salt is something I try.

Angelique makes a no salt added bread that only had 5 mg of sodium in it. Try baking your own bread with very little sodium.  Some foods other than bread that raise sodium are chips cheese. 

I feel lf I take my bp standing it is lower  

 

Sent from my awesome Blue iPhone 13

~Diane

[sourav...@gmail.com]

I am from India Diane. I do have a nephrologist here but as per him, everything is fine. Maybe it is and just my doubts.

Great to know your journey.

[Diane Smith]

Where in India do u live ?! I used to live in Gujarti near Poona  

My story is here. http://www.polycysticliverdisease.com/html/diane.html

Sent from my awesome Blue iPhone 13

~Diane

On Dec 18, 2022, at 8:11 AM, sourav...@gmail.com <sourav...@gmail.com> wrote:

I am from India Diane. I do have a nephrologist here but as per him, everything is fine. Maybe it is and just my doubts.

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